ACFAC Site: Meeting Blog

Sunday, February 12, 2012

2-15-2012 Agenda

Please print your own copy of the agenda and review the "attachments" to assist in cross infection control!

Anyone calling in needs to do so AHEAD of time. We've asked that call-in or WebEx members get set up 10 minutes before the scheduled meeting time.

Advisory Council visitors are welcome; however, attendees must respect the CF Center at Stanford cross infection guidelines. Please do not attend in person if you have an active viral infection or any other contagious condition. If you have CF, keep three feet between yourself and others who have CF. Avoid shaking hands with others. Additionally, individuals with CF who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) or who have cultured Methicillin-resistant Staphylococcus aureus (MRSA) within the past two years, or who are currently culturing a bacterium resistant to all antibiotics (pan resistant) may not attend our sessions in person due to the cross-infection risks to others with CF. Please see the "To attend this meeting via WebEx" section at the bottom of this agenda if you wish to attend this month's meeting via WebEx.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, February 15, 2012, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS

Introduction of any guests or others as needed.

COUNCIL BUSINESS

1.   Council chairperson: Welcome and theme for this month:  What do we champion next?
     - Update on all-Stanford Advisory Council meeting
     - Stanford CF Education Day, March 3

2. Bylaws revisions: We will vote on the revisions proposed at our January meeting. Revisions include job description for Website Revision Manager; updated job description for Secretary and for Membership Chair. Please read revisions and bylaws at https://docs.google.com/open?id=0B7WrtjnOi5wMZTRhNmZjNTktNmVjNi00ODE1LWFlNjEtZjQ2NDA4MzVkNGE5

3. Clinic/patient communication: Eric W. to present his communication with Kathy regarding providing patients with hard copy information regarding required follow up tests, medications, etc. at the end of each visit.

4. CF mentor questionnaire: Lauren to present update on who has reviewed the questionnaire; next steps to launch mentor program; council's role if any. Please see questionnaire at https://docs.google.com/open?id=0B7WrtjnOi5wMMDEwOTA4OWQtM2ZiNS00YWY1LTljZDYtNmU4YTk0YTcxOTRj

5.   "We want to hear your voice" inpatient form: Ed to report from inpatient inquiry and Eric W. to report from admin inquiry: process for getting form to and from the B3/C3 inpatients; nurse manager to whom inpatients give the form. Please see form at https://docs.google.com/open?id=0B7WrtjnOi5wMNzhjYmU5M2ItYTI2Yi00ODljLWJhZGUtMDg5Y2JmZTIxOWYz

6.   Adult CF website tabs: Colleen/Kriss to report on Sick Call and Admission checklists: input received from clinic staff. Please see checklists at https://docs.google.com/open?id=0B7WrtjnOi5wMZGIxN2MwMjUtMjk3NS00ZWUxLWI5MDUtMTU2YzAzMDY0YjUw and https://docs.google.com/open?id=0B7WrtjnOi5wMZmM0ODU3YTMtMGE1Zi00N2E4LWIxOGYtNWQwOGI2ZTM5NWY0

7.   "Get to know the team" questionnaire: Colleen/Kriss have gathered responses; please see at https://docs.google.com/open?id=0B7WrtjnOi5wMODI0YzUzYzktODllNy00MDYxLTg2MmYtZTM3YmJmZmQ2MWRj

8.   Council concerns and open discussion period

9.   Set date/time for next meeting: Wednesday, March 21, 2012, 5:00pm-7:00pm

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WebEx:

Topic: CF Mtg - February
Date: Wednesday, February 15, 2012
Time: 5:00 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 807 595 212
Meeting Password: february

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To join the online meeting (Now from mobile devices!)
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1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=166142647&UID=1232005712&PW=NOD g1ODM2MTNk&RT=MiM0
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: february
4. Click "Join".

To view in other time zones or languages, please click the link: https://stanfordmed.webex.com/stanfordmed/j.php?ED=166142647&UID=1232005712&PW=NOD g1ODM2MTNk&ORT=MiM0

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To join the audio conference only
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To receive a call back, provide your phone number when you join the meeting, or call the number below and enter the access code.
Call-in toll-free number (US/Canada): 1-877-668-4493
Call-in toll number (US/Canada): +1-408-600-3600
Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?serviceType=MC&ED=166142647 &tollFree=1
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf

Access code:807 595 212

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For assistance
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1. Go to https://stanfordmed.webex.com/stanfordmed/mc
2. On the left navigation bar, click "Support".

# # #

Thursday, February 2, 2012

1-18-2012 Meeting Minutes

CF Adult Advisory Council Meeting Minutes 1/18/2012

Present

Council Members: Colleen, Jay , Ed, Lauren , Laura , Erika , Ann , Kriss , Jackie

Guests: Zoe

Absent: Elyse, Eric

Council Business

1. Members encouraged to participate actively in council such as reading agenda and coming prepared to meetings. Council membership roster to be updated.

2. - Elections held for the following officer roles: Secretary, Membership Chairperson, Vice Chairperson and Chairperson. The responsibilities of each role were described and the council voted in new officers as follows: Jackie elected to Secretary role, Colleen re-elected to Membership Chairperson, Kriss elected to Vice Chairperson, and Laura elected to Chairperson.

- Council discussion regarding process once the 2-year term is up for general membership. It was decided by the council to add responsibilities to secretary and membership chairperson roles with wording to be approved at next meeting in which by-laws are approved.

- It was voted on by the council to add a new officer role, Website Revision Manager. Jay elected to this position and responsibilities will be added to bylaws and voted on for approval at next council meeting.

3. Eric W. still in process of working with clinic to improve communication and provide hard copies of requested follow-up. Details to be shared at next council meeting.

4. The council was asked to provide feedback to the pediatric advisory council regarding the transitional process from the pediatric clinic to the adult clinic. A brainstorming session was held, the information will be organized by Colleen and provided at next meeting, then submitted to the pediatric advisory council.

5. The council discussed the 2 checklists to be put on the tabs on the Adult CF Website. Discussion was held to modify content. The "Sick Call How-To" will be sent to the clinic nurse for further review and the "Hospital Admission Packing List" to be further clarified.

6. Colleen / Laura received response from 3 clinic team members on the "Get To Know the Team" questionnaire. After council discussion, the responses will be added to the next agenda, more team members will been encouraged to fill out questionnaire for submission to the Adult CF Website.

7. Lauren to email the completed CF Mentor Survey to Dr. Mohabir to approve and forward to Meg.

Open Discussion / New Business

1. We want to hear your voice flyers no longer available on the unit and difficult to find in clinic. Ed and Laura to contact Eric W. to determine contact person on inpatient unit and ensure no modification needs to be made to the form given new management .

2. Stanford holds an advisory council meeting for advisory councils. Laura to provide information at next meeting regarding date / time of meeting so that interested members can attend.

3. Discussion held regarding updating of the council website. Wording will be added to Website Revision Manager role to include this as a responsibility to ensure that the website is up to date.

Next council meeting set for Wednesday, February 15^th, 5-7 pm.

Monday, January 16, 2012

1-18-2012 Agenda

Please print your own copy of the agenda and review the "attachments" to assist in cross infection control!

Anyone calling in needs to do so AHEAD of time. We've asked that call-in or WebEx members get set up 10 minutes before the scheduled meeting time.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, January 18, 2012, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS

Introduction of any guests or others as needed.

COUNCIL BUSINESS

Council chairperson: Interim Chair Laura - Welcome and theme for this month: Our council needs active membership and leadership in order to continue to exist. Updated membership roster to be sent.

January elections: All officer positions are up for election; for each position, we will either re-elect the existing officer or elect a new person. Membership Chairperson, Secretary, Vice Chairperson, Chairperson. ACFAC website bios to be updated after elections.

Clinic/patient communication: Eric W. to present his communication with Kathy regarding providing patients with hard copy information regarding required follow up tests, medications, etc. at the end of each visit.

Pediatric transition brochure: Pediatric Council seeks our input on ideas to support CF patients in transition from peds to adult clinic, such as what we would liked to have known before we transitioned; location of clinic; members of the team; wisdom to ease the new patient's transition. Colleen to lead discussion and brainstorming on this topic for a brochure being created by Peds Council.

Adult CF website tabs: Kriss to present checklists for adult CF tabs, including Sick Call How-To and Hospital Admissions Packing List. See documents at https://docs.google.com/open?id=0B7WrtjnOi5wMY2RmMDY4Y2UtMzVhNC00YTA0LTljZDMtZjQ2MWFmNjJmOWVi
and https://docs.google.com/open?id=0B7WrtjnOi5wMYjlhMmNlOWItOTdiZC00ZDgyLTgyZDctMDc1ZTk0MmMwMDgx Check in with Colleen re written sections of website tabs.

"Get to Know the Team" questionnaire: Colleen to present update on responses

CF Mentor Survey: Lauren to present update. See document at https://docs.google.com/open?id=0B7WrtjnOi5wMNmUwNDg3OTMtMzE2Yi00Y2M1LWIzZDYtOWJlZDI0ZjY5ODJl

Council concerns and open discussion period

Set date/time for next meeting: Wednesday, February 15, 2012, 5:00pm-7:00pm

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To attend this meeting via WebEx: Topic: CF Mtg - January Date: Wednesday, January 18, 2012 Time: 5:00 pm, Pacific Standard Time (San Francisco, GMT-08:00) Meeting Number: 803 923 933 Meeting Password: january ------------------------------------------------------- To join the online meeting (Now from mobile devices!) ------------------------------------------------------- 1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=166141867&UID=1232004717&PW=NMz A5Zjg0NTA5&RT=MiM0 2. If requested, enter your name and email address. 3. If a password is required, enter the meeting password: january 4. Click "Join". To view in other time zones or languages, please click the link: https://stanfordmed.webex.com/stanfordmed/j.php?ED=166141867&UID=1232004717&PW=NMz A5Zjg0NTA5&ORT=MiM0 ------------------------------------------------------- To join the audio conference only ------------------------------------------------------- To receive a call back, provide your phone number when you join the meeting, or call the number below and enter the access code. Call-in toll-free number (US/Canada): 1-877-668-4493 Call-in toll number (US/Canada): +1-408-600-3600 Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?serviceType=MC&ED=166141867 &tollFree=1 Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf Access code:803 923 933 ------------------------------------------------------- For assistance ------------------------------------------------------- 1. Go to https://stanfordmed.webex.com/stanfordmed/mc 2. On the left navigation bar, click "Support

Thursday, December 15, 2011

12-21-2011 Agenda

Please print your own copy of the agenda and review the "attachments" to assist in cross-infection control!

Anyone calling in needs to do so AHEAD of time. We've asked that call-in or WebEx members get set up 10 minutes before the scheduled meeting time.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda
Date/Time: Wednesday, December 21, 2011, 5:00pm-7:00pm
Location: none

Note: this is an informational agenda; we are not holding a meeting.

INTRODUCTORY REMARKS

Note: this is an informational agenda; we are not holding a meeting. Please read the agenda.

COUNCIL BUSINESS

1. Council chairperson: Interim Chair Laura - Welcome & happy holidays. Now keep reading!

2. January elections: All officers, please think if you wish to remain in your position. All members, please review the officer roles in the council bylaws, and give serious thought about which roles you may be able to fill. Our council needs active membership and leadership in order to continue to exist.

3. CF center website (http://cfcenter.stanford.edu):

· "Get To Know the Team" questionnaire: Colleen has distributed the questionnaire to the CF team; Lara and Meg have responded.

· Adult CF center website tab: Colleen has collated the ideas from our brainstorming session, and noted individuals who might be able to write each section; review the document at https://docs.google.com/open?id=0B7WrtjnOi5wMNzE2YjQ2ZjQtMzllYy00MjM1LThiOTMtMmEwZmQ3YTU4NDg1

4. Mentor program: Lauren has revised and updated the mentor questionnaire for potential mentors; review the document at https://docs.google.com/open?id=0B7WrtjnOi5wMNmUwNDg3OTMtMzE2Yi00Y2M1LWIzZDYtOWJlZDI0ZjY5ODJl

5. Clinic communication: Eric W. has contacted Kathy regarding providing patients with hard copy information regarding what follow up tests, medications, etc. are required at the end of each visit. He will present this information at the January meeting.

6. Set date/time for next meeting: January 18, 2012 , Wednesday at 5pm

To attend this meeting via WebEx:
Note: this is an informational agenda; we are not holding a December meeting. Please read the above agenda to prepare for January's meeting.

Monday, December 5, 2011

November 2011 Minutes

11-16-2011 Minutes

Advisory Council visitors are welcome; however, attendees must respect the CF Center at Stanford cross infection guidelines. Please do not attend if you have an active viral infection or any other contagious condition. If you have CF, keep three feet between yourself and others who have CF. Avoid shaking hands with others. Additionally, individuals with CF who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) or who have cultured Methicillin-resistant Staphylococcus aureus (MRSA) within the past two years, or who are currently culturing a bacterium resistant to all antibiotics (pan resistant) may not attend our sessions in person due to the cross-infection risks to others with CF. If you would like to attend via teleconferencing, please contact Erika Harrington mrs.harrington@sbcglobal.net (the current Advisory Council secretary). She will let you know how you can participate. (Web conferencing/Skype not yet available.)

CF Advisory Council Meeting Minutes 9/21/2011

Present:

Council Members: Colleen Dunn, Laura Steuer, Ann Robinson, Kriss Benson, Erika Harrington, Lauren Caltron, Jay Archibald, Eric Marten, Ed Kinney.

Guests: Zoe Davies, Dr. Paul Mohabir, Siri Vaeth (member of the CF Parent Advisory Council)

Absent: Lizeth Haber, Dave Cartnal, Jackie Rotier, Elyse Elconin-Goldberg

Introductory Remarks:

All council me

Council Business:

From the Pedia

CF Advisory Council Meeting Minutes 11-16-11

Present:

Council Members: Colleen Dunn, Ann Robinson, Kriss Benson, Erika Harrington, Laura Steuer, Ed Kinney, Eric Marten, Jay Archibald, Lauren Caltron, Elyse Elconin-Goldberg, Jackie Rotier.

Guests: Arthur Yang, Zoe Davies, Dr. Paul Mohabir

Absent: Lizeth Haber

Introductory Remarks:

All council members introduced themselves for the benefit of those using remote attendance methods.
Guests introduced themselves.
Minutes from the previous meeting were approved.

Council Business:

Kriss Benson has stepped down as Council Chairperson. Tonight's meeting will be her last as Chair. Laura Steuer volunteered and was voted in as our temporary Chairperson through February. Kriss will co-chair to assist Laura as she learns this position.
Conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election were talked about briefly. Some council members showed possible interest in officer positions that will be available in February. All members have been asked to read the bylaws before our January meeting to get a better idea of what each role is in charge of.
ACFAC Website: http://cfcenter.stanford.edu/acfac/ Update 2: "Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th).
Add a new Adult tab on the CF center website?
Review: http://cfcenter.stanford.edu
Suggestions for what would be in this new Adult tab:
a. note from last meeting: "How adult CF clinic works"
b. note from last meeting: "Your Adult Doctor Choices"
c. note from last meeting: "How To Call In Sick"
d. note from last meeting: adult mentor program page or blurb
e. discussion of each council member's brainstorming on this topic

-Each member made their suggestions. Colleen sent out an e-mail listing all of the ideas the members came up with.
Mentor Program discussion and suggestions
- form for potential mentors (review file: coming soon) Laura will send the mentor questionnaireto Dr. Mohabir to review with Meg Devorak.
Council concerns and open discussion period:

-Lauren and Kriss will prepare "What to bring to the hospital" list for the adult CF website tab and give to Colleen.

-Laura will connect with Eric Williams regarding WebEx info for January 2012 meeting.

-Eric will look into the issue of unified communication from the clinic: who writes up all the info from the varied team members after an app't to give to the patient?

-Reminder: All members need to send the Chair a copy of any presentations to be made at subsequent meeting (powerpoint, visuals, forms to be passed out, etc) for inclusion in Agenda for Webex viewers.
Please note: Adult CF Support Group is on 12/2 with a new start time at 11:30am (new 1.5 hour meetings)
The council will NOT have a council meeting in December. Instead an update will be sent to everyone via e-mail.

Thursday, November 10, 2011

11-16-2011 Agenda

Please print your own copy of the agenda and review the "attachments" to assist in cross-infection control!

Anyone calling in needs to do so AHEAD of time. We've asked that call-in or WebEx members get set up 10 minutes before the scheduled meeting time.

Advisory Council visitors are welcome; however, attendees must respect the CF Center at Stanford cross infection guidelines. Please do not attend in person if you have an active viral infection or any other contagious condition. If you have CF, keep three feet between yourself and others who have CF. Avoid shaking hands with others. Additionally, individuals with CF who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) or who have cultured Methicillin-resistant Staphylococcus aureus (MRSA) within the past two years, or who are currently culturing a bacterium resistant to all antibiotics (pan resistant) may not attend our sessions in person due to the cross-infection risks to others with CF. Please see the "To attend this meeting via WebEx" section at the bottom of this agenda if you wish to attend this month's meeting via WebEx.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda
Meeting Date/Time: Wednesday, November 16th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS

Introduction of Council Members (if guests are present)

Introduction of Guests (if guests are present)

Approval of Minutes from Previous Meeting:

COUNCIL BUSINESS

Council Chairperson - Fill position permanently now? Interim Chairperson? Skip December? - Kriss
Conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election. Officers please think about if you want to ask to remain in your position. Members please give real thought to if you want to consider an officer position and any questions you might have about each position. - Laura
ACFAC Website: http://cfcenter.stanford.edu/acfac/
- Update 2: "Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th).
Discussion: Ask to add a new Adult tab on the CF center website?
Review: http://cfcenter.stanford.edu
Suggestions for what would be in this new Adult tab:
a. note from last meeting: “How adult CF clinic works”
b. note from last meeting: “Your Adult Doctor Choices”
c. note from last meeting: “How To Call In Sick”
d. note from last meeting: adult mentor program page or blurb
e. discussion of each council member's brainstorming on this topic
Mentor Program discussion and suggestions - Lauren
- form for potential mentors (review file: coming soon)
Council concerns and open discussion period
Please note: Adult CF Support Group is on 12/2 with a new start time at 11:30am (new 1.5 hour meetings)
To close our meeting, Vice Chairperson (Laura) reviews her record of all items needing action and person(s) responsible for each action
Set date/time for next meeting – **Discuss December 21st, Wednesday at 5pm

___________________________________
To attend this meeting via WebEx:
Topic: CF Mtg - November
Date: Wednesday, November 16, 2011
Time: 5:15 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 806 703 515
Meeting Password: november

-------------------------------------------------------
To join the online meeting (Now from mobile devices!)
-------------------------------------------------------
1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=164676232&UID=1226523577&PW=NMDQ4NzkwNjUz&RT=MiM0
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: november
4. Click "Join".

To view in other time zones or languages, please click the link:
https://stanfordmed.webex.com/stanfordmed/j.php?ED=164676232&UID=1226523577&PW=NMDQ4NzkwNjUz&ORT=MiM0

-------------------------------------------------------
To join the audio conference only
-------------------------------------------------------
To receive a call back, provide your phone number when you join the meeting, or call the number below and enter the access code.
Call-in toll-free number (US/Canada): 1-877-668-4493
Call-in toll number (US/Canada): +1-408-600-3600
Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?serviceType=MC&ED=164676232&tollFree=1
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf

Access code:806 703 515

-------------------------------------------------------
For assistance
-------------------------------------------------------
1. Go to https://stanfordmed.webex.com/stanfordmed/mc
2. On the left navigation bar, click "Support".

IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, discuss your concerns with the meeting host prior to the start of the recording or do not join the session. Please note that any such recordings may be subject to discovery in the event of litigation.